Dreaded Cancer, Mark III

[Black_Fly]

My son (45) just had his prostate removed. He caught a very aggressive type of cancer before it metastasized (we think). When he found out he needed a PET scan in early November, his urologist wanted to wait until after the holidays. That could have been fatal, as it turned out. He got the PET and had the surgery at the Mayo Clinic in MN on December 18th. His PSA is dropping and if gone completely on next test, he won’t need further treatment. The moral of the story is get GOOD advice, educate yourself, and take responsibility for your own care. If you need the surgery, make sure there is a pathologist IN the operating room. Otherwise, it’s a crap shoot whether they removed enough tissue and lymph nodes.

 

[Glenn MacGrady]

My PSA is for you to get your PSA checked every year.

This triggers my frustration about a discussion I had two days ago with my third urologist, the first two having retired, about whether someone of my age should continue to have PSA screenings.

As background, contrary to the 1990s, when PSA screening was all in sweeping vogue, the prostate cancer medical community is now obsessively focused on what they call "over diagnosis" and "over treatment" of prostate cancer because of high PSA signals. In order to reduce these over diagnoses and treatments at the population level, the various American associations of urologists, cancer specialists, and preventive medicine specialists all have differing guidelines as to what age groups should receive PSA screening, as do their Canadian and European counterparts. It's a cacophonous mess.

In general, to avoid over diagnosis and over treatment of prostate cancer, these guidelines essentially specify that young men and old men shouldn't get screened. The age guidelines vary from association to association, along with some other factors, but a general idea is that men under 50 (or 45) or over 70 (or 75) just shouldn't bother getting PSA screened. The logic for old men seems to be that if no one sees a PSA signal of potential cancer in these men, no one will be tempted to over diagnose or over treat them for prostate cancer—and, besides, most of these old men will die of something else before their cancers fatally metastasize.

For myself, I don't care about POPULATION level guidelines or what may kill MOST old men. I only care about ME, my life. From my perspective, it is undeniable that some percentage of older men, albeit a minority, will develop an aggressive prostate cancer that can be detected by a PSA screen and that some of them could have their life prolonged by a swift and appropriate surgical or other medical treatment. For that reason, I argued to my urologist that I prefer to continue PSA screenings (and DREs) even though with my (knock on wood) low PSA history I'm likely to die of something other than prostate cancer.

He went along with my preference, although I could tell that he was annoyed that I knew so much about this issue, and about simple Aristotelian logic, and had the temerity to challenge his "vast experience."

 

[GeoBoy]

This triggers my frustration about a discussion I had two days ago with my third urologist, the first two having retired, about whether someone of my age should continue to have PSA screenings.

As background, contrary to the 1990s, when PSA screening was all in sweeping vogue, the prostate cancer medical community is now obsessively focused on what they call "over diagnosis" and "over treatment" of prostate cancer because of high PSA signals. In order to reduce these over diagnoses and treatments at the population level, the various American associations of urologists, cancer specialists, and preventive medicine specialists all have differing guidelines as to what age groups should receive PSA screening, as do their Canadian and European counterparts. It's a cacophonous mess.

In general, to avoid over diagnosis and over treatment of prostate cancer, these guidelines essentially specify that young men and old men shouldn't get screened. The age guidelines vary from association to association, along with some other factors, but a general idea is that men under 50 (or 45) or over 70 (or 75) just shouldn't bother getting PSA screened. The logic for old me seems to be that if no one sees a PSA signal of potential cancer in these men, no one will be tempted to over diagnose or over treat them for prostate cancer—and, besides, most of these old men will die of something else before their cancers fatally metastasize.

For myself, I don't care about POPULATION level guidelines or what may kill MOST old men. I only care about ME, my life. From my perspective, it is undeniable that some percentage of older men, albeit a minority, will develop an aggressive prostate cancer that can be detected by a PSA screen and that some of them could have their life prolonged by a swift and appropriate surgical or other medical treatment. For that reason, I argued to my urologist that I prefer to continue PSA screenings (and DREs) even though with my (knock on wood) low PSA history I'm likely to die of something other than prostate cancer.

He went along with my preference, although I could tell that he was annoyed that I knew so much about this issue, and about simple Aristotelian logic, and had the temerity to challenge his "vast experience."

I will get PSA’s until I leave this world or have my prostate removed. I knew two gentlemen that were too busy to go to the doctor until urology problems arose. One gentleman 65+ years old decided that sex with his wife was more important than prostate removal and was dead in three months. The other gentleman had his prostate removed, bladder surgery, because the cancer spread outside the prostate, and eventually the cancer spread to his bones then to his brain. Both men were wonderful people, hard working, loved their families, pillars of their communities. God rest their souls.

 

[Keeled Over]

I will get PSA’s until I leave this world or have my prostrate removed. I knew two gentlemen that were too busy to go to the doctor until urology problems arose. One gentleman 65+ years old decided that sex with his wife was more important than prostrate removal and was dead in three months. The other gentleman had his prostrate removed, bladder surgery, because the cancer spread outside the prostrate, and eventually the cancer spread to his bones then to his brain. Both men were wonderful people, hard working, loved their families, pillars of their communities. God rest their souls.

That is a very sad story. I am sorry for you and your family. I have heard people prioritize sex over the surgery - I know one right now. We have lunch at Christmas each year. We had occasion to go to the men's room at the same time. I am fairly certain he is still in there. Important to remember prostate surgery does not necessarily no more date nites. Mr. Nerve Bundles will decide that, and the faster you catch it, the less damage to the bundles. Trust me, you want these. The actual surgery is pretty basic and the recovery is straightforward. And if anyone tells you horror stories about the biopsy they are re-telling urban legend stuff. You don't even feel it. But try not to catch a glimpse of the instrument.

Glenn/Alan - have I driven this too far off the rails? I mean, it's a CANOEING site. Wait - "And if you keep your prostrate in good working order you will be much more comfortable while canoeing."

This triggers my frustration about a discussion I had two days ago with my third urologist, the first two having retired, about whether someone of my age should continue to have PSA screenings.

As background, contrary to the 1990s, when PSA screening was all in sweeping vogue, the prostate cancer medical community is now obsessively focused on what they call "over diagnosis" and "over treatment" of prostate cancer because of high PSA signals. In order to reduce these over diagnoses and treatments at the population level, the various American associations of urologists, cancer specialists, and preventive medicine specialists all have differing guidelines as to what age groups should receive PSA screening, as do their Canadian and European counterparts. It's a cacophonous mess.

In general, to avoid over diagnosis and over treatment of prostate cancer, these guidelines essentially specify that young men and old men shouldn't get screened. The age guidelines vary from association to association, along with some other factors, but a general idea is that men under 50 (or 45) or over 70 (or 75) just shouldn't bother getting PSA screened. The logic for old men seems to be that if no one sees a PSA signal of potential cancer in these men, no one will be tempted to over diagnose or over treat them for prostate cancer—and, besides, most of these old men will die of something else before their cancers fatally metastasize.

For myself, I don't care about POPULATION level guidelines or what may kill MOST old men. I only care about ME, my life. From my perspective, it is undeniable that some percentage of older men, albeit a minority, will develop an aggressive prostate cancer that can be detected by a PSA screen and that some of them could have their life prolonged by a swift and appropriate surgical or other medical treatment. For that reason, I argued to my urologist that I prefer to continue PSA screenings (and DREs) even though with my (knock on wood) low PSA history I'm likely to die of something other than prostate cancer.

He went along with my preference, although I could tell that he was annoyed that I knew so much about this issue, and about simple Aristotelian logic, and had the temerity to challenge his "vast experience."

I am glad your Dr. acquiesced. I do believe that for so many things in life a positive mental attitude is key. I am the same as you - I want my data. For those of you not quite in the age range Glenn mentioned above, but would like data to feel better, if you have a history in your family they will do the test earlier. Just let the Dr. know. I can only imagine a scenario where a person who would like the data, but wasn't old enough to get tested yet, might suddenly remember old uncle Ted who, sadly, did have prostrate cancer. Same process for colonoscopies, but we can cover that in a future installment. Time to start making tripping plans!!

 

[Gamma1214]

A word to anyone testing high on PSAs: Don't freak out until they tell you the results of the biopsy. I got tested for the 1st time at 50 and my PSAs were 5x "normal" (testosterone is also 4x "normal"). Dating a nurse at the time, she & her co-workers assured me that I almost certainly had prostate cancer and I sweated it out for months until I could get the biopsy and wait for the results. Turns out that everything was clear and, like any "average", there are outliers; both high & low.

3 take-aways for me: get checked early so you know your baseline, don't worry until they say there's something to worry about and don't wait forever to start living your life; the next time you might not be as lucky. (turns out that, for me, the next time actually WAS cancer but just thyroid which is very treatable).

I can't quite emulate Keeled Over and go all summer but I'm going to go as hard as I can go for as long as I'm able

Wait - "And if you keep your prostrate in good working order you will be much more comfortable while canoeing."

Nice save.

 

[Glenn MacGrady]

I will get PSA’s until I leave this world or have my prostate removed.

A word to anyone testing high on PSAs: Don't freak out until they tell you the results of the biopsy.

It's true that a PSA level is an imperfect screen for prostate cancer. There are lots of false positives and false negatives. That is known more now than 25 years ago, and is partially what's behind this fear of "over diagnosis." However, the PSA level along with the even more imperfect DRE are the only available simple, easy and inexpensive screening tools for this second most prevalent cancer killer of men (after lung cancer). Imaging and biopsies are further down the symptom screening chain.

Glenn/Alan - have I driven this too far off the rails? I mean, it's a CANOEING site. Wait - "And if you keep your prostrate in good working order you will be much more comfortable while canoeing."

Because of my personal history I relate this topic strongly to canoeing. I watched my father, who introduced me to canoeing, die slowly of metastasizing bladder cancer.

My two best canoeing friends for 20 years were a father and son, both of whom got aggressive prostate cancer. The father got it in his late 60s and, in addition to all sorts of invasive treatments, had a total orchiectomy (look that up) to try to stop the metastasis. He lived three times longer than the five years predicted, but eventually the cancer spread all over and into his brain. His son, who watched and suffered through all this, got the same diagnosis as his father in his late 50's. He had to self-catheterize every day for months as well as take heavy duty chemo. I know he made it to 70 as of our last contact a couple of years ago.

I don't want to take any risk of getting prostate or any other cancer that is even partially screenable. I'd rather deal, knowledgeably and intelligently, with the later possibilities of over diagnosis and over treatment, if and when that unfortunate occasion arises, than take a "what I don't know can't hurt me" approach by forgoing the only two simple prostate cancer screening tests available, PSA and DRE, however imperfect they may be.